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Managing communication with young people who have a potentially life threatening chronic illness: qualitative study of patients and parents

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As a pediatric oncologist I'm very involved in this communication.
In my opinion an open communication is a prerequisite for the acceptance of treatment.
But all of us involved in this communication (physician, psychologist,
nurse, etc.) must take into account the couple of child and parents.

Every family has a history of development which depends on the education,
conception and behaviour of the parents. Some children are overprotected
and are more dependent. They are not prepared for an open communication.
But there are many clever children. Children are more mature than they were ten
years ago. The explosion of communication, mass media, internet, give
today a large possibility for clear and competent information. Every
child sooner or later will know the diagnosis.
The best communication is with the child and the parents at once, in the
presence of the treating team and the psychologist.

Another important factor is the quality of the communication.
The physician, the nurse and the psychologist must have good communication
skills. We must know very well the psychology of the child. We must have
enough availability for this dialogue and be honest.
There is no unique solution for a proper communication.
But when we love children and search not to harm them, we shall find the
way to acomplish this difficult duty and win the confidence of the patient
and his or her family.

Qualitative information concerning the type and amount of information
given by parents to young people is an important corner stone in upholding
the rights of children and young adults. The paper by Young et al (2002,
326: ) offers an important insight into the rub between parental desires
to protect their offspring from unpleasant news whilst at the same time
recognising their child’s autonomy. However, the paper falls short in
two respects.

Although the authors state that they did not address the
influence of sex, this factor cannot be simply discounted without
explanation. Upholding the argument that qualitative data needs gender
analysis is the recognition that there exists women’s health movements /
policies and a bourgeoning body of literature pertaining to men’s health
based on salient social theories. Ergo, Young et al needed to recognise
that the discourse of male children / young adults did not or did, in
someway, differ from those of their female counterparts.

Secondly, a
mythological problem exists in that the voices of the mothers and fathers
were aggregated into a single factor, that of “the parent”.

This is not
an uncommon feature of family research. However, this approach to
analysing the data assumes that male and female parents / guardians have
the same relationship with their children. This is contrary to literature
exploring gender relations within families. Fathers sometimes have a
unique relationship with their daughters and the same can be said for
mothers and sons. Extrapolated to Young et al’s work this implies that
one parent may have a closer understanding of the information needs of
their child in times of serious illness. Adding to the call for a
disaggregation of data relating to parental discourse is an understanding
that mothers tend to be the nexus between their family and health
professionals. Therefore women are more likely to be the brokers of
health information and the key decision makers as to what information is
selectively leaked to family members. Men are more likely to concur with
their spouse / partners opinion because they are perceived to be better
informed on health and family matters. A verbatim account of inter-
parent discussions as to why health information should be withheld would
be a valuable prelude to Young et al’s work as it stands.

I am very troubled by the philosophy of Bridget Young, et al, in
suggesting that parents are often an obstacle to the perceived right of
medical professionals to have unimpeded communication with the children of
those parents. Young pays passing lip service to not undermining the
parent's role, but, make no mistake, she is definitely undermining the
rights and responsibilities of parenthood.

Obviously, sometimes parents can be overprotective. However, until
solid evidence is presented to the contrary, I think that the average
parent is much more likely to make a better guardian for his or her child
than the average treatment professional.

There seems to me to be absolutely no reason why medical
professionals shouldn't work with and through parents instead of around
parents as suggested by Young. Her unwritten conclusion of finding
multiple parents being "obstacles" in her very small sample is much more
an indictment of the inadequacy of communications with parents by
treatment professionals than it is evidence that a substantial percentage
of parents aren't able to make reasonable decisions about their own
children.

Although we have the same powerful governmental usurpation of
parental authority trends in the U.S., I have long noted
that Europe is more prone to this philosophy than we are. Perhaps, in
some small, but cumulatively important way, such governmental attitudes
has something to do with why so many people, especially educated
Europeans, are opting to have so few children of their own.

England's planned implementation of a "children's national service
framework," which has the declared aim of putting children and young
people at the centre of care and building services around their needs, is
very frightening to me. Clearly, the author sees parents as lacking any
right to control communications by outsiders with their own children.

Perhaps, sometimes a parent can be educated; perhaps, sometimes a
parent knows better than a therapist or their own child. I personally
don't think any medical professional has any right to bypass any parent
unless there is solid evidence of abuse. I often long for the world my
own parents raised me up in where government was far less intrusive.
Perhaps, English therapists and physicians have much better interpersonal
judgment than that which we find in America. Somehow, this article makes
me think otherwise.

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BridgetYoung, MaryDixon-Woods, Kate CWindridge, DavidHeney

YoungBridget, Dixon-WoodsMary, WindridgeKate C, HeneyDavid. Managing communication with young people who have a potentially life threatening chronic illness: qualitative study of patients and parentsBMJ 2003; 326 :305